From: Steven Boland
How do I begin? I would rather have cancer, because I know I could at least get treatment and I would have a chance at life or at least know where I stand. Late stage Lyme Disease leaves you with limited options and those options will leave you financially destroyed and you never know where you stand. The answer lies somewhere between the two extremes of the controversy. This bacteria is killing me very slowly, and the pain cannot be described. When my wife asks, “How does it hurt?” The sensation is like my thumb is in a vice grips and being burned by a blow torch and then add the constant debilitating body pain.
My Lyme Disease story. My wife and I went on our annual morel mushroom hunt (2009) on my grandmother’s land. Next morning I found a deer tick above my right armpit. Mistake #1, I went to Urgent Care, and this is not a joke, the nurse practitioner on duty was looking up the treatment options on the Internet. No treatment was given at this time. Mistake #2, I did not research Lyme Disease myself! Mistake #3, I went back to Urgent Care one week later with a very prominent bullseye rash and flu-like symptoms. I was prescribed ten antibiotic pills (penicillin). Now I know, given the knowledge that if I was prescribed a 4-6 week course of doxycycline, I would probably could have been cured. I actually began to feel better but the chronic pain was becoming more frequent and extremely debilitating. Four months later things changed dramatically. I could not turn my head and was having trouble walking. I found a doctor locally that had knowledge of the disease, but after six months of treatment, the symptoms only got worse. The local healthcare provider decided to put a moratorium in place and stopped treating Lyme Disease altogether. I eventually found a LLMD (Lyme Literate Medical Doctor) but the disease had taken even a larger toll on my health. I began another round of antibiotics, with very limited benefits. I became more and more chronically ill. I tried several experimental treatments and herbal preparations. I had some small successes but always two steps forward and three back. I still believe in my LLMD because they keep trying to go after the disease and not just trying to cover the symptoms.
I am horrified that this blatent lack of humanity and care by the majority of mainstream medical practitioners continues with little hope for positive change in this country. Unfortunately, this scenario is not new, nor is it surprising. I have known several people who struggle with the physical, financial, and political ramifications of Lyme Disease, and each with a similar story of a vibrant, healthy life struck down with little or no help available.
What is the reason for all this suffering? It is the classic Ponzi scheme super-sized American style with insurance companies at the top of the pyramid followed by big pharma and down the line to paid junkets to exotic destinations. But I cannot complain; I was told at a young age, life is not fair. I need to accept the fact of my health (body & mind), finances, livelihood and relationships.
Please contact your law makers. It is easy to do now with technology and tell them that Lyme sufferers need help. This disease is known to be one of the most painful and debilitating. It is said that Lyme Disease is not fatal, but evidence is to the contrary. This disease kills very slowly and painfully. For many, it starts in the joints and moves into the muscles. The bacterial infection destroys nerves and affects every system in the body. Lyme Disease is prolific in its destructive ability! I actually wish I could articulate more profoundly my argument but it is also destroying my mind.